Information Packs for newly diagnosed individuals

The following online information ‘packs’ provide individuals and their families with usable information on a variety of topics related to living with a genetic and/or rare condition.

The following online information ‘packs’ provide useable information for individuals and their families who are newly diagnosed with a specific genetic and/or rare condition.

There isn’t one ‘pack’ for everyone as patients have different needs and the resources are tailored within the pack depending on the individual patient:

*note: these aren’t all the resources; for some resources, there are only hard copies at GSWA.



Online resources:




Online resource:

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